A Pained Life: Build a Better Mousetrap

By Carol Levy, PNN Columnist

I was watching an old TV series – “Diagnosis Murder” -- about a doctor who also solves mysteries. In one episode, Dr. Mark Sloan (Dick Van Dyke) was in a patient's room with her family. He told them their mother was in the early stages of Alzheimer's.

Her son asked, in a tremulous voice, “What can we do?”

Dr. Sloan smiles and said there was good news, along with the bad.

“It's a terrible disease, but on the positive side there are new drugs being developed all the time,” he said.

That got me mad. And it seemed as if every commercial I saw during and after the show was touting new medications, for everything from cancer to erectile dysfunction. Listening to them made me ever madder.

According to the National Cancer Institute, about 40% of us will be diagnosed with cancer at some point in our lives. Developing new cancer treatments, especially ones that are less harmful and painful to patients, is a necessity. After all, cancer kills.

Studies have found that erectile dysfunction affects about 18% of men. ED is a troublesome and embarrassing problem to have, but you won’t die from it.

Why do they spend so much time and money developing new drugs (and commercials) for medical conditions? Simple answer: the drugs make a lot of money for the pharmaceutical industry, even when a relatively small number of people may benefit from them.

Chronic pain may not kill in the typical sense, although many deaths can be traced back to poorly treated pain as an ancillary cause. According to a recent study, there are more new cases of chronic pain among U.S. adults than diabetes, depression and high blood pressure.

Given that the number of people with chronic pain is larger than many other conditions for which they are developing new drugs, why are we left out?

Many of us have had the experience of a doctor taking us off opioids or significantly reducing the dose, even when we’ve taken them safely and responsibly for years. The government has created fear among medical providers, especially those who specialize in pain management, making them uncomfortable prescribing opioids.

So, the question arises: Why isn't more being done to research and develop new non-opioid treatments for pain?

What comes to mind are mousetraps. Until they build a better mousetrap, until they create new and effective pain medications that are not opioid-based, we're stuck with what we have. Build a better mousetrap and the world will beat a path to a pharmaceutical company's door.

There is big money to be made in finding new pain medications. And there are plenty of mice. Why not build a better mousetrap?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

I Was Kicked Out of a Support Group for Having Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Recently, after the death of my mother, I registered to participate in a grief support group. The group met in the evening, which is good for able-bodied day workers, but a very poor time for me as far as chronic pain goes.

After working and the efforts of the day, my body is tired and worn down; which is a terrific setting for pain and other symptoms to come visit. I knew the group’s meeting time would be difficult, but was determined to do my best – and let me be very clear, I did just that.

The problem was, I proved to be all-too-human and they proved to be all too discriminatory.

By the 6-week mark, I had missed two meetings. Both times it was due to pain. I couldn’t get in or out of my car and was in no shape to stand for two hours. The furniture was too large for me to sit in with my back against the chair and my feet on the floor. No support is a no-go for my back, so I must stand in most places I attend. It’s nobody’s fault (well, maybe furniture makers) and I’ve adapted my life to it. Last time I checked, I was 157 cm tall (5’2”) and don’t have the height to sit properly in standard-sized chairs.

Anyone who knows me well knows that I have multiple pain conditions. It all started when I was 19 years old and much more has come my way as I age.

Anyhow, back to my sins of being human. The morning after I missed the second meeting, I received a telephone call to tell me that I had missed too much time and it would have a negative effect on the group’s bonding. I could not return. That was their policy.

At the time of the call, I had just gotten out of bed, my head was brain-fogged, and I wasn’t really registering the message. It took a little bit for my brain to kick-in and realize I had been kicked out! I was hurt and angry. but mostly I really wanted to advocate for everyone in pain. So I decided to send them an email.

“By telling me I was no longer welcome, you chose not only to dismiss my grief, but also to dismiss me because I am not an able-bodied person. These dismissals are not only unkind and quite the opposite of support, but also inflict moral injury to a person who is already suffering,” I wrote in my email.

I also said that I didn’t want or expect a reply. However, someone took the time to write back an extremely ignorant and dismissive email. I would gladly share it with you, but curiously the email ends with this legal disclaimer:

“This communication may contain confidential & privileged material for the sole use of the intended recipient. Any unauthorized review, use or distribution by others is strictly prohibited. If you have received this message by mistake, please advise the sender by reply email & delete the message. Thank you.”

I was so utterly shocked at being kicked out of a “support” group for having an invisible disability that I needed to speak with someone who knows about these things. Now I really needed support!

I was grateful for the opportunity to explain my experience with Kattlynne Grant, who is working on her second Masters and a PhD in Disability Studies at Brock University in Ontario. In addition to studying disability, Ms. Grant also lives with an invisible disability. I found her to be a great support for all of us:

“Just by the fact that someone responded to you when asked not to, it seems that they were more concerned about defending themselves and not hearing you as a person,” she told me. “By telling you that this happens to everyone who misses two sessions shows they really miss the mark of the implicit bias built into that policy – where it favours a certain type of embodiment over others because it assumes/expects a ‘normal’ level of function.  It is very exclusionary to those with disabilities, as it means that those who may struggle to keep with normative embodied expectations will not have access to their services.”

Someone within the support group organization took the time to shift the blame onto me and argue that I was in the wrong for not making them aware. Aware of what, my disability? What would they have done with that information? 

We all signed an agreement that we would do our best to attend all eight sessions. I did so wholeheartedly and meant it. I was never not committed to the group.

The facilitator said they realize that sometimes “life happens” and if we must miss a session, to just call ahead and let them know, which I did.  Nobody said two strikes and you’re out – not that it would have made it right. I’m only saying this because it was not even part of the conversation.

I was wholly offended to get a finger pointed back at me with passive aggressive statements such as “all we ask for is commitment” – which is all that I gave. I felt like I had been swept back to a time when disabled people were seen as a scourge on society, with no ethical or legal rights.

It was all very upsetting and offensive. I am upset to even have to share this with you, but it is what I need to do. I am being totally honest when I tell you that I was blind-sided when I was kicked out.

Ms. Grant had more to say about to these types of experiences.

“This move of shifting blame truly exposes how deeply that the ‘ideology of ability’ is ingrained within their practices,” she said. “The marginalized are often made responsible for their own adversity and exclusion, rather than acknowledging their role in this and the need for structural change.”

The Law Commission of Ontario describes ableism this way:

“A belief system, analogous to racism, sexism, or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, and of less inherent value than others. Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.” 

Here is how the Ontario Human Rights Commission defines systemic discrimination:

“Systemic or institutional discrimination consists of attitudes, patterns of behaviour, policies or practices that are part of the social or administrative structures of an organization or sector, and that create or perpetuate a position of relative disadvantage for people with disabilities. The attitudes, behaviour, policies or practices appear neutral on the surface but nevertheless have an adverse effect or exclusionary impact on people with disabilities.”

Bringing awareness to the ways that we unintentionally reinforce systems of privilege and exclusion should be important to any organization, but especially for a support group. It would be a way to reduce the pain and grief of future members, not just add to them. 

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.  

A Pained Life: Stop the Denial

By Carol Levy, PNN Columnist

For many of us, pain is sporadic. Sometimes we know exactly when it will be start or what will set it off. Other times, it may hit spontaneously.

When my trigeminal neuralgia pain started in 1976, it was constant, triggered and spontaneous. Now it can be triggered by any touch to the affected area. Or it can come out of the blue.

When I don’t have pain, it often lulls me into denial. I’ll think, “Hey, I'm okay!” Denial is one of my defense mechanisms. I don't have the pain right now, so I won't have it. 

And then, like a freight train bearing down on me, the pain hits. That's when the denial ends. Sometimes it takes only a few minutes to recover, sometimes much longer.

Denial of pain also comes from friends, colleagues or family. It often results in an argument or anger. Does that change their denial? Not often.

Is it worth the hurt and emotional pain when we try to change their minds, when we try to convince them of the reality of our pain? Again, not often.

Many of us have had medical professionals refuse to accept our pain. Years ago, I found this note in my neurologist's chart: “There are days like today when I believe in her pain.”

It wasn't his to believe in or not. If he chose not to believe me, then the remedy was simple. Fire me as a patient. It is not worth debating with a doctor about the existence of our pain.  

A big pain trigger for me is eye movement. Any eye usage causes pain. I can read, sometimes for as long as 20 minutes, before the pain starts yelling at me and I am forced to put the book away.  

Too many times I don't want to give in to the pain. Just one more paragraph, I’ll think, or at least a sentence. If I try to deny the pain and continue to read, it grows stronger, bigger, a green hulk of pain.  

Then I have no choice. I fling the book away and wait, sometimes for hours, for the pain to subside to a tolerable level. I could have stopped the pain. I could have taken control over it. All I had to do was accept that I can't read for as long as I want. But, like a food addict, the pleasure I get from reading overwhelms my common sense.

For those of us struggling to stop denying the pain when we know we should, the denial only adds to our battle. We call ourselves “survivors” or “victims.” Those are words of war.

For me, the war isn’t over. If and when I win, I'll stop the denial. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

You Have the Right to Lose Your Rights

By Mia Maysack, PNN Columnist

After experiencing medical injustice and malpractice multiple times, I began advocating for myself and others who live in similarly painful ways.

It didn't take long to realize that the concept of "pain" is universal, but different for each of us. We all experience pain to varying degrees, but our perspectives differ. Each individual possesses an existence that is unique to them alone.

All that is to say that my advocacy efforts shifted away from "my" cause and instead became “ours.” It has continued evolving to the point where it is no longer solely fixated on healthcare, but instead acknowledges all systems (political, economic, social, cultural, etc.) and how they tie together and influence each other.

That's why I no longer identify specifically as a "patient advocate."  I lost patience with all the sh*t!  Now I'm just someone who believes in rights and liberation for all, understanding there are different ingredients in that recipe for each person.

The following is a recent example of a situation I experienced that connected different systems together – and not in a good way. There are far too many examples of things like it leading to a person's harm, hurt or worse. My aim is to make an illustration of the hypocrisy behind it and the hurdles it creates.

‘We Don’t Make the Laws’

On some days, I just cannot get outta bed. Other days, I may be able to take a little trip somewhere.  Why not enjoy different scenery, apart from the four walls that seem to close in on me?

While taking a drive, I passed police officers on two separate occasions. Although I thought nothing of it either time because I had no reason to, they pulled me over. When they approached the vehicle to request my license, I respectfully asked why this was happening. 

Their reply was: “Your tints."

As someone disabled by a neurological disorder that makes me very sensitive to light, tinted windows assist in making moments of normalcy possible for me. This amenity even has the approval of a world-renowned neurology department in one of the top teaching hospitals in the country, which happens to be located in my state. I provided the proof of that claim to the officers, and what happened next is where the system fails.

Although it was acknowledged that my tints are for a health issue, it was also explained to me that even with proper documentation, I'm still not legally allowed to have tinted windows on my car. I've had them for years and driven endless places without an issue, but now I was being told that I can’t have them, because dark windows can be a safety issue.  

“Driving isn't something I'm always able to do,” I protested. “The law is prohibiting a tool that I need and helps keep myself and others safe."

"We don't make the laws," the officers said.

I understand that. But I also took the opportunity to explain that people in positions of authority -- whether a cop, doctor or elected official -- are public service workers. That means they exist to aid, assist, support and contribute to the betterment of those they are in the position to serve: Us.

Tints are a petty example in the grand scheme of things, but they speak to a deeper issue of policies and regulations being put in place that do not benefit each individual on a case-by-case basis.

Simply put, the law does not get to dictate what’s best for our health. This is an issue I’ll continue addressing, perhaps even in court, because it’s difficult enough to survive without having your liberties threatened. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Will Bird Flu Be the Next Pandemic?

By Amy Maxmen, KFF Health News

Headlines are flying after the Department of Agriculture confirmed that the H5N1 bird flu virus has infected dairy cows around the country. Tests have detected the virus among cattle in nine states, mainly in Texas and New Mexico, and most recently in Colorado, said Nirav Shah, principal deputy director at the Centers for Disease Control and Prevention, at a May 1 event held by the Council on Foreign Relations.

A menagerie of other animals have been infected by H5N1, and at least one person in Texas. But what scientists fear most is if the virus were to spread efficiently from person to person. That hasn’t happened and might not. Shah said the CDC considers the H5N1 outbreak “a low risk to the general public at this time.”

Viruses evolve and outbreaks can shift quickly. “As with any major outbreak, this is moving at the speed of a bullet train,” Shah said. “What we’ll be talking about is a snapshot of that fast-moving train.” What he means is that what’s known about the H5N1 bird flu today will undoubtedly change.

With that in mind, KFF Health News explains what you need to know now.

Q: Who gets the bird flu?

Mainly birds. Over the past few years, however, the H5N1 bird flu virus has increasingly jumped from birds into mammals around the world. The growing list of more than 50 species includes seals, goats, skunks, cats, and wild bush dogs at a zoo in the United Kingdom. At least 24,000 sea lions died in outbreaks of H5N1 bird flu in South America last year.

What makes the current outbreak in cattle unusual is that it’s spreading rapidly from cow to cow, whereas the other cases — except for the sea lion infections — appear limited. Researchers know this because genetic sequences of the H5N1 viruses drawn from cattle this year were nearly identical to one another.

The cattle outbreak is also concerning because the country has been caught off guard. Researchers examining the virus’s genomes suggest it originally spilled over from birds into cows late last year in Texas, and has since spread among many more cows than have been tested. “Our analyses show this has been circulating in cows for four months or so, under our noses,” said Michael Worobey, an evolutionary biologist at the University of Arizona in Tucson.

Q: Is this the start of the next pandemic?

Not yet. But it’s a thought worth considering because a bird flu pandemic would be a nightmare. More than half of people infected by older strains of H5N1 bird flu viruses from 2003 to 2016 died. Even if death rates turn out to be less severe for the H5N1 strain currently circulating in cattle, repercussions could involve loads of sick people and hospitals too overwhelmed to handle other medical emergencies.

Although at least one person has been infected with H5N1 this year, the virus can’t lead to a pandemic in its current state. To achieve that horrible status, a pathogen needs to sicken many people on multiple continents. And to do that, the H5N1 virus would need to infect a ton of people. That won’t happen through occasional spillovers of the virus from farm animals into people. Rather, the virus must acquire mutations for it to spread from person to person, like the seasonal flu, as a respiratory infection transmitted largely through the air as people cough, sneeze, and breathe. As we learned in the depths of covid-19, airborne viruses are hard to stop.

That hasn’t happened yet. However, H5N1 viruses now have plenty of chances to evolve as they replicate within thousands of cows. Like all viruses, they mutate as they replicate, and mutations that improve the virus’s survival are passed to the next generation. And because cows are mammals, the viruses could be getting better at thriving within cells that are closer to ours than birds’.

The evolution of a pandemic-ready bird flu virus could be aided by a sort of superpower possessed by many viruses. Namely, they sometimes swap their genes with other strains in a process called reassortment. In a study published in 2009, Worobey and other researchers traced the origin of the H1N1 “swine flu” pandemic to events in which different viruses causing the swine flu, bird flu, and human flu mixed and matched their genes within pigs that they were simultaneously infecting. Pigs need not be involved this time around, Worobey warned.

Q: Can I get sick from contaminated milk?

Cow’s milk, as well as powdered milk and infant formula, sold in stores is considered safe because the law requires all milk sold commercially to be pasteurized. That process of heating milk at high temperatures kills bacteria, viruses, and other teeny organisms. Tests have identified fragments of H5N1 viruses in milk from grocery stores but confirm that the virus bits are dead and, therefore, harmless.

Unpasteurized “raw” milk, however, has been shown to contain living H5N1 viruses, which is why the FDA and other health authorities strongly advise people not to drink it. Doing so could cause a person to become seriously ill or worse. But even then, a pandemic is unlikely to be sparked because the virus — in its current form — does not spread efficiently from person to person, as the seasonal flu does.

Q: What should be done?

A lot! Because of a lack of surveillance, the U.S. Department of Agriculture and other agencies have allowed the H5N1 bird flu to spread under the radar in cattle. To get a handle on the situation, the USDA recently ordered all lactating dairy cattle to be tested before farmers move them to other states, and the outcomes of the tests to be reported.

But just as restricting covid tests to international travelers in early 2020 allowed the coronavirus to spread undetected, testing only cows that move across state lines would miss plenty of cases.

Such limited testing won’t reveal how the virus is spreading among cattle — information desperately needed so farmers can stop it. A leading hypothesis is that viruses are being transferred from one cow to the next through the machines used to milk them.

To boost testing, Fred Gingrich, executive director of a nonprofit organization for farm veterinarians, the American Association of Bovine Practitioners, said the government should offer funds to cattle farmers who report cases so that they have an incentive to test. Barring that, he said, reporting just adds reputational damage atop financial loss.

“These outbreaks have a significant economic impact,” Gingrich said. “Farmers lose about 20% of their milk production in an outbreak because animals quit eating, produce less milk, and some of that milk is abnormal and then can’t be sold.”

The government has made the H5N1 tests free for farmers, Gingrich added, but they haven’t budgeted money for veterinarians who must sample the cows, transport samples, and file paperwork. “Tests are the least expensive part,” he said.

If testing on farms remains elusive, evolutionary virologists can still learn a lot by analyzing genomic sequences from H5N1 viruses sampled from cattle. The differences between sequences tell a story about where and when the current outbreak began, the path it travels, and whether the viruses are acquiring mutations that pose a threat to people. Yet this vital research has been hampered by the USDA’s slow and incomplete posting of genetic data, Worobey said.

The government should also help poultry farmers prevent H5N1 outbreaks since those kill many birds and pose a constant threat of spillover, said Maurice Pitesky, an avian disease specialist at the University of California-Davis.

Waterfowl like ducks and geese are the usual sources of outbreaks on poultry farms, and researchers can detect their proximity using remote sensing and other technologies. By zeroing in on zones of potential spillover, farmers can target their attention. That can mean routine surveillance to detect early signs of infections in poultry, using water cannons to shoo away migrating flocks, relocating farm animals, or temporarily ushering them into barns. “We should be spending on prevention,” Pitesky said.

Q: What could happen to people who get the H5N1 bird flu?

No one really knows. Only one person in Texas has been diagnosed with the disease this year, in April. This person worked closely with dairy cows, and had a mild case with an eye infection. The CDC found out about them because of its surveillance process. Clinics are supposed to alert state health departments when they diagnose farmworkers with the flu, using tests that detect influenza viruses, broadly. State health departments then confirm the test, and if it’s positive, they send a person’s sample to a CDC laboratory, where it is checked for the H5N1 virus, specifically. “Thus far we have received 23,” Shah said. “All but one of those was negative.”

State health department officials are also monitoring around 150 people, he said, who have spent time around cattle. They’re checking in with these farmworkers via phone calls, text messages, or in-person visits to see if they develop symptoms. And if that happens, they’ll be tested.

Another way to assess farmworkers would be to check their blood for antibodies against the H5N1 bird flu virus; a positive result would indicate they might have been unknowingly infected. But Shah said health officials are not yet doing this work.

“The fact that we’re four months in and haven’t done this isn’t a good sign,” Worobey said. “I’m not super worried about a pandemic at the moment, but we should start acting like we don’t want it to happen.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Meet the Chronic Pain Patient Running for Arizona Legislature

By Barby Ingle, PNN Columnist

As a rare disease and chronic pain patient, I have spent over 20 years advocating for others and myself in the pain community. I’ve worked on legislation to help patients in more than 30 states, including my home state of Arizona, where two of the bills I supported have become law.

I am now running for the Arizona House of Representatives from District 7, which includes Pinal, Gila, Coconino and Navajo counties, as well as the cities of Flagstaff and Apache Junction, where I live.

My campaign focuses on healthcare access, pain management and disability rights. I believe that everyone should have access to individualized healthcare and proper pain management. This can get people working again and participating in society, which would ultimately save taxpayers money.  

In a recent interview with the Arizona Liberty Podcast, I shared my experiences running for office as a chronic pain patient. I explained that I was running to help make a difference in my community and to create positive change for those often overlooked by the political system. 

As a patient with algoneurodystrophy, a severe nerve disease also known as Complex Regional Pain Syndrome (CRPS), running for office is not an easy task. I have faced many challenges during my campaign, including physical limitations and the need for frequent breaks. Sometimes I have to sit down while everyone around me is standing.  

I am determined to push through these challenges to make a difference. I believe my unique perspective as a chronic pain patient can inspire others to engage in the political process and advocate for their needs. 

In addition to my campaign work, I am a motivational speaker, author, and the immediate past president of the International Pain Foundation. Over the years, I have used my platform to raise awareness about chronic pain and to advocate for better treatment options. Education and awareness are crucial to improving the lives of those with chronic pain. 

My campaign has made waves in my district and garnered attention from the pain community, with financial support and endorsements from patients and providers. Volunteers are also helping me get the word out about my candidacy.

I want laws that restore the patient-provider relationship and give pain management providers the ability to treat each patient individually.

I want to change Arizona’s “red cap” law, which requires all Schedule II opioids dispensed by a pharmacist to have a red cap, in addition to a warning label about potential addiction. The label is fine, but the red cap stigmatizes pain patients and the medications they need. 

We are also currently short about 5,000 healthcare providers in Arizona, a state that attracts many senior citizens and patients with chronic or rare diseases who need specialized care. We must address that so all Arizonans can get the healthcare they deserve.

I hope my dedication and perseverance will inspire others to fight for their communities and better healthcare options. Despite the adversity we all face, positive change is possible.

You can learn more about me and my campaign at barbyingle.com.  I hope to get your vote in the Republican primary on July 30, 2024. 

Painful Choices About a Safe Space

By Cynthia Toussaint, PNN Columnist

It’s no secret. For me, there’s no better medicine than self-care.

To that point, I’m a proud member of my local YMCA. In fact, it’s been my ultimate safe-space for 15 years: around the block, accessible, a generous lap swimming pool, topped by a loving community of warm and caring people. A lot of perfect for someone who can’t walk a block due to Complex Regional Pain Syndrome, but can swim a mile.

To give back some, I’ve done quite a bit of fundraising to provide low-cost memberships for families in need, and landed one of the Y’s aquatic teachers a national ABC News print piece, the angle being the benefits of pool therapy for women in pain as I believe devotedly in the healing power of water.

All was going swimmingly, until COVID. When we returned in mid-2021, my heart sank when I spied a new member, Annie, who I sensed was going to be trouble with a capital T. What little lap swimming she did was overwhelmed by her excessive yelling and joke-telling mid-pool with the lifeguard.

Day after day, I became increasingly stressed while others rolled their eyes and donned ear plugs. To make matters worse, Annie soon blew past personal boundaries by jumping in on my conversations, often physically pulling friends away from me. My place of serenity was turning into a high-decibel scrum.      

CYNTHIA TOUSSAINT

It dawned on me that what was driving Annie’s aberrant behavior was a boatload of childhood trauma. She was deregulated and manic, showing earmarks of a deeply wounded woman. Annie flouted pool rules by wearing inappropriate, oversexualized swimwear (shorts and a braless t-shirt) with no cap for her long, black locks.

In one of the few encounters with Annie before things went south, she boasted about freezing her brother out, emphasizing all the legal folk he had to circumvent to get to her. Annie’s cackle as an exclamation point, her pure joy of hurting another person, was darkly disturbing.                     

One day, out of the blue, a deep freeze set in as Annie began avoiding me. This was terribly awkward, compounded by the Y pool and dressing room being an intimate place where everyone knows everyone’s business. I continued basic pleasantries until Annie yelled me down for doing so.

Next day, in an attempt to fix things, I asked Annie if I’d done something to offend her. Without looking my way, she briskly responded, “No, nothing’s wrong. We’re fine.” But I knew better.

Bad turned to worse when, at that point, Annie completely shut me out. It was as though I didn’t exist as she avoided eye contact altogether. This tactic was deeply uncomfortable and hurtful as she appeared to be in good standing, even sweet, with others. 

Due to Annie’s puzzling cruelty, I started dreading going to my “safe space.” My lower-body pain amp’d and my nervous system was in fight or flight mode before I’d head out to the Y. Even my anticipation the day prior was becoming unhealthy, and I often woke in the night with worry.

Because I couldn’t bear to lose my beloved pool and community, I went to a therapist whose assessment provided strong insight. She suspected Annie was “negatively transferring,” meaning that because I remind her of an abusive person in her childhood, she’s delusional about my power over her. My psychologist advised that this is a targeted psychotic process and, for safety sake, I swim elsewhere.  My close friends seconded that emotion. 

With heavy heart, I tried other Ys and fitness centers. In the end though, none of them worked because of my pain and limitations, e.g., I had to use my wheelchair to get to the pool, there were no exit stairs, and/or my partner and caregiver John couldn’t run necessary errands because we were far from home.

When I fearfully returned to my now toxic Y, John accompanied me in the pool to rehab an injury and offer support in the event of an encounter. Annie’s behavior immediately escalated when she spread a nasty rumor about me to a fellow swimmer who I adore. Zoe shared the gossip out of concern for my well-being, along with being disturbed by the grim energy now shrouding our community.

Before entering the pool the next day, Annie yelled at me twice and, for the first time, physically threatened me by raising her hand to my face. That was it. I went to member relations and made a thorough complaint. Luckily, Zoe, who’d witnessed the happenings, made one as well.

Fortunately, since the Y spoke to Annie, her behavior has simmered. While still avoiding conversation and eye contact, she’s not threatening me, though I’m aware her anger’s just below the surface. Better, but far from okay. What was once heavenly, now casts a pall.

If I was a fully functional person without high-impact pain, I’d have left this Y many moons ago and created a healthy community elsewhere. But because of limitations and specific needs, my only choice is to tolerate an unsafe, dysfunctional situation, to make the best of a bad.

Let’s face it. My choice was really no choice. And that’s the way it is with folk hammered by pain and disability. Pickings are slim and the best solutions are generally the ones that are physically do-able. This not only applies to our places of exercise and community, but also where we live, shop and work. Really, everything we do.   

But let’s not let a bully bury the lead. Come hell or high water, I’m continuing to swim, which is one of the best self-care cards I hold. And when it comes to wrangling with the pitfalls of pain and chronic illness, holding onto what health we can maintain and preserve, is always our best choice.               

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and multiple co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

How Insurers Take Advantage of Copay Assistance Programs

By Barby Ingle, PNN Columnist 

With the prices of many medications soaring, copay assistance programs are gaining in popularity. Drug manufacturers create copay programs to help insured patients afford expensive medications by covering all or part of their deductible, copays and other out-of-pocket expenses. That can save patients hundreds or even thousands of dollars on a single prescription.

But when insurers, pharmacy benefit managers (PBMs) and employers no longer count the copay assistance toward a deductible, it can lead to unexpectedly high bills for patients, including many who are chronically or terminally ill. The patient is often shocked when they receive a bill for a medication that is significantly higher than usual.  

“When insurers and PBMs do not count the value of copay assistance toward cost-sharing requirements, patients often experience a ‘copay surprise’ at the pharmacy counter and may be forced to walk away without their needed medication because they cannot afford it,” says California Assemblymember Akilah Weber, MD, (D-La Mesa).

Weber recently introduced AB 2180 to ban these copay “accumulator” programs by requiring PBMs and insurers to apply copay assistance towards a patient’s deductible and other out-of-pocket expenses. The goal is to ensure that copay assistance helps the people it is intended for – patients -- rather than lower an insurer’s costs. 

Accumulator programs, also known as "accumulator adjustments" or "copay maximizers,” have already been banned in 19 states, including Arkansas, Arizona, Colorado, Connecticut, Delaware, Georgia, Illinois, Kentucky, and Louisiana.

Over 80 national and California advocacy organizations that make up the All Copays Count in California Coalition have endorsed AB 2180, saying it would protect the most vulnerable patients from “harmful and deceptive insurance schemes.” According to one study, up to 70% of patients abandon their prescriptions when their out-of-pocket costs reach $250 or more.

“Chronic and terminal illnesses create tremendous financial challenges for patients and their families. When insurers utilize copay accumulator policies which do not count third-party payment towards the deductible or out-of-pocket maximum, patients often cannot afford their medications, which has serious health implications,” Siri Vaeth, Executive Director of the Cystic Fibrosis Research Institute, said in a statement.

But PBM’s and insurers say the criticism is unfair. They say copay assistance programs are often little more than marketing ploys by the drug industry to discourage patients from switching to lower cost medications. Insurers say capturing that copay money – by not applying it towards deductibles -- helps them slow the rising cost of premiums. Some are working with third-party companies like PrudentRX and SaveOnSP to identify and implement more of these costs savings.  

There has been bipartisan legislation introduced in Congress at the federal level, which will require financial assistance to count toward deductibles and other out-of-pocket costs. The Help Ensure Lower Patient Copays Act would apply to plans not already subject to state rules. The bill was introduced last year, but has yet to get past the committee stage. 

As the healthcare industry continues to evolve, it is likely that insurers will create more of these “maximizer” programs. If you are paying for more out of pocket expenses due to insurance policies, I encourage you to share your story here and on social media.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

Living on False Hope

By Carol Levy, PNN Columnist

I live on false hope. I think hope is what keeps many of us afloat. And when the medical community tells you, “I have nothing left to offer you,” false hope is all there is.

And then I open my email, and there is a story in KevinMD, a medical site that I trust. It’s about using ultrasound as a treatment for pain. My heart soars with anticipation. Maybe, maybe this time, the answer has arrived.

The headline, “Ultrasound shows promise as new pain treatment, targeting a specific brain region,” sets off a specific area of my brain. I feel the false hope lifting and true hope taking its place.

And then I read the article.

Just like too many other studies I have read, this is not research that can be applicable to many people. The researchers only used a sample population of 23 people. That is just too small a number to extrapolate out to the larger pain community.

I have had many brain surgeries for my trigeminal neuralgia, so I'm not put off by a treatment that targets the brain. But the author of the article wonders if stimulating areas of the brain with ultrasound could be used for nefarious purposes, such as torture. 

I was going to do research to see what other new ideas and treatments are out there. Then I realized I didn’t really want to know, because most of the research doesn’t pan out or involves too few people to take it seriously.

I want to read about research involving enough participants that there is real hope in what they found. A study that uses a large number of people and with results so positive that it may be a realistic treatment option.

So far, I haven’t seen that. I know the pharmaceutical industry is working on non-opioid pain relievers, but I think the better way to go would be to find something that minimizes our pain. I'm afraid there may be no way to ever truly eradicate many painful conditions. 

Until I find a study involving hundreds or thousands of participants using a new pain treatment that actually works, is affordable, and has few side effects, I suppose false hope is better than none. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

Shortage of Primary Care Doctors a ‘Public Health Crisis’

By Lynn Arditi, The Public’s Radio

First, her favorite doctor in Providence, Rhode Island, retired. Then her other doctor at a health center a few miles away left the practice. Now, Piedad Fred has developed a new chronic condition: distrust in the American medical system.

“I don’t know,” she said, her eyes filling with tears. “To go to a doctor that doesn’t know who you are? That doesn’t know what allergies you have, the medicines that make you feel bad? It’s difficult.”

At 71, Fred has never been vaccinated against covid-19. She no longer gets an annual flu shot. And she hasn’t considered whether to be vaccinated against respiratory syncytial virus, or RSV, even though her age and an asthma condition put her at higher risk of severe infection.

“It’s not that I don’t believe in vaccines,” Fred, a Colombian immigrant, said in Spanish at her home last fall. “It’s just that I don’t have faith in doctors.”

The loss of a trusted doctor is never easy, and it’s an experience that is increasingly common.

The stress of the pandemic drove a lot of health care workers to retire or quit. Now, a nationwide shortage of doctors and others who provide primary care is making it hard to find replacements. And as patients are shuffled from one provider to the next, it’s eroding their trust in the health system.

The American Medical Association’s president, Jesse Ehrenfeld, recently called the physician shortage a “public health crisis.”

“It’s an urgent crisis, hitting every corner of this country, urban and rural, with the most direct impact hitting families with high needs and limited means,” Ehrenfeld told reporters in October.

In Fred’s home state of Rhode Island, the percentage of people without a regular source of routine health care increased from 2021 to 2022, though the state’s residents still do better than most Americans.

Hispanic residents and those with less than a high school education are less likely to have a source of routine health care, according to the nonprofit organization Rhode Island Foundation.

Shrinking Workforce

The community health centers known as federally qualified health centers, or FQHCs, are the safety net of last resort, serving the uninsured, the underinsured, and other vulnerable people. There are more than 1,400 community health centers nationwide, and about two-thirds of them lost between 5% and a quarter of their workforce during a six-month period in 2022, according to a report by the National Association of Community Health Centers.

Another 15% of FQHCs reported losing between a quarter and half of their staff. And it’s not just doctors: The most severe shortage, the survey found, was among nurses.

In a domino effect, the shortage of clinicians has placed additional burdens on support staff members such as medical assistants and other unlicensed workers.

Their extra tasks include “sterilizing equipment, keeping more logs, keeping more paperwork, working with larger patient loads,” said Jesse Martin, executive vice president of District 1199 NE of the Service Employees International Union, which represents 29,000 health care workers in Connecticut and Rhode Island.

“When you add that work to the same eight hours’ worth of a day’s work you can’t get everything done,” Martin said.

Last October, scores of SEIU members who work at Providence Community Health Centers, Rhode Island’s largest FQHC, held an informational picket outside the clinics, demanding improvements in staffing, work schedules, and wages.

The marketing and communications director for PCHC, Brett Davey, declined to comment.

Staff discontent has rippled through community health care centers across the country. In Chicago, workers at three health clinics held a two-day strike in November, demanding higher pay, better benefits, and a smaller workload.

Then just before Thanksgiving at Unity Health Care, the largest federally qualified health center in Washington, D.C., doctors and other medical providers voted to unionize. They said they were being pressed to prioritize patient volume over quality of care, leading to job burnout and more staff turnover.

The staffing shortages come as community health centers are caring for more patients. The number of people served by the centers between 2015 and 2022 increased by 24% nationally, and by 32.6% in Rhode Island, according to the Rhode Island Health Center Association, or RIHCA.

“As private practices close or get smaller, we are seeing patient demand go up at the health centers,” said Elena Nicolella, RIHCA’s president and CEO. “Now with the workforce challenges, it’s very difficult to meet that patient demand.”

In Rhode Island, community health centers in 2022 served about 1 in 5 residents, which is more than twice the national average of 1 in 11 people, according to RIHCA.

Job vacancy rates at Rhode Island’s community health centers are 21% for physicians, 18% for physician assistants and nurse practitioners, and 10% for registered nurses, according to six of the state’s eight health centers that responded to a survey conducted by RIHCA for The Public’s Radio, NPR, and KFF Health News.

Pediatricians are also in short supply. Last year, 15 pediatricians left staff positions at the Rhode Island health centers, and seven of them have yet to be replaced.

Research shows that some of the biggest drivers of burnout are workload and job demands.

Community health centers tend to attract clinicians who are mission-driven, said Nelly Burdette, who spent years working in health centers before becoming a senior leader of the nonprofit Care Transformation Collaborative of Rhode Island.

These clinicians often want to give back to the community, she said, and are motivated to practice “a kind of medicine that is maybe less corporate,” and through which they can they develop close relationships with patients and within multigenerational families.

So when workplace pressures make it harder for these clinicians to meet their patients’ needs, they are more likely to burn out, Burdette said.

‘I Can’t Get an Appointment’

When a doctor quits or retires, Carla Martin, a pediatrician and an internist, often gets asked to help. The week before Thanksgiving, she was filling in at two urgent care clinics in Providence.

“We’re seeing a lot of people coming in for things that are really primary care issues, not urgent care issues, just because it’s really hard to get appointments,” Martin said.

One patient recently visited urgent care asking for a refill of her asthma medication. “She said, ‘I ran out of my asthma medicine, I can’t get a hold of my PCP for refill, I keep calling, I can’t get through,’” Martin said.

Stories like that worry Christopher Koller, president of the Milbank Memorial Fund, a nonprofit philanthropy focused on health policy. “When people say, ‘I can’t get an appointment with my doctor,’ that means they don’t have a usual source of care anymore,” Koller said.

Koller points to research showing that having a consistent relationship with a doctor or other primary care clinician is associated with improvements in overall health and fewer emergency room visits.

When that relationship is broken, patients can lose trust in their health care providers.

That’s how it felt to Piedad Fred, the Colombian immigrant who stopped getting vaccinated. Fred used to go to a community health center in Rhode Island, but then accessing care there began to frustrate her.

She described making repeated phone calls for a same-day appointment, only to be told that none were available and that she should try again tomorrow. After one visit, she said, one of her prescriptions never made it to the pharmacy.

And there was another time when she waited 40 minutes in the exam room to consult with a physician assistant — who then said she couldn’t give her a cortisone shot for her knee, as her doctor used to do.

Fred said that she won’t be going back. What will she do the next time she gets sick or injured and needs medical care?

“Well, I’ll be going to a hospital,” she said in Spanish.

But experts warn that more people crowding into hospital emergency rooms will only further strain the health system, and the people who work there.

This article is from a partnership that includes The Public’s Radio, NPR, and KFF Health News, a national newsroom that produces in-depth journalism about health issues.

Does Netflix Trivialize Pain?

By Pat Anson, PNN Editor

Movies and TV shows have long been criticized for the way they depict women, minorities and religions -- either through sensationalism, stereotyped portrayals, or simply omission.

A new analysis of popular programs that aired on Netflix suggests that physical pain is also being ignored, trivialized, or presented in misleading ways.

Researchers in Canada and the UK looked at over a dozen movies and TV series that featured teenage characters. They found that the teens’ pain was almost always the result of violence or accidents – not common medical conditions such as migraine or menstruation. The characters often had minimal reactions to their own pain and observers had “an overwhelming lack of empathy” for them.   

“If we’re not showing the types of pain that adolescents might typically experience like back pain and menstrual pain, then we’re trivializing pain. We’re not doing a great job of enabling them to think about how to manage pain, how to talk about pain and how to show empathy when other people experience pain,” said lead author Abbie Jordan, PhD, a lecturer in the Department of Psychology and Centre for Pain Research at The University of Bath.

“This research matters because if every film and television series shows a boy being a ‘tough guy’ when they experience pain and a girl as a ‘damsel in distress’ in need of saving, they might think they have to be like that in real life. This depiction reinforces old-fashioned ideas about gender and is misleading."

Jordan and her colleagues watched programs such as Sex Education, Stranger Things and Enola Holmes, and found that viewers were exposed to an average of 10 incidents of pain every hour.

The two Netflix shows with the highest number of painful incidents were Outer Banks, a series about teens searching for a hidden treasure, and Spiderman: Homecoming, a movie about a young Peter Parker facing off against a new villain.

Violence (57%) was the most likely cause of pain on the Netflix shows, followed by everyday pain such as headaches (21%) and pain stemming from injuries (20%). Chronic pain or pain resulting from medical procedures were depicted less than one percent of the time.

“‘OUTER BANKS”

Researchers say the Netflix shows often reinforced sexist and patriarchal stereotypes. Boy characters were more likely to experience pain (77%) than girls (23%), and they were also more likely to be criticized or laughed at by other characters. Boys were often portrayed as heroic figures coming to the rescue, while girls were more emotional when reacting to pain.   

The plots and characters are all fictional, but researchers say adolescents watching at home are likely to mirror the behavior themselves.  

“Media is one of the most powerful engines of influence on children’s development and could be harnessed to address pain and suffering in the world. Stories matter. Fictional stories can matter more in some cases than real-life stories. So, let's create stories to reflect the world we want to see: A humane, diverse, inclusive, equitable, compassionate, and caring world,” says co-author Melanie Noel, PhD, an Associate Professor of Clinical Psychology at the University of Calgary.

“I want Netflix to take this seriously and get excited and inspired to directly influence millions of children around the world. They have a monumental opportunity to influence the compassion and humanity we see in our children and our future world.”

The study findings, published in the journal PAIN, echo a previous study that showed pain was trivialized for even younger children (aged 4-6 years). That study also showed that chronic pain in childhood and adolescence was rarely portrayed in popular media.

Finding Medical Care Can Be Exhausting for Seniors

By Judith Graham, KFF Health News

Susanne Gilliam, 67, was walking down her driveway to get the mail in January when she slipped and fell on a patch of black ice. Pain shot through her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.

And then began the run-around that so many people face when they interact with America’s uncoordinated health care system.

Gilliam’s orthopedic surgeon, who managed previous difficulties with her left knee, saw her that afternoon but told her “I don’t do ankles.”

He referred her to an ankle specialist who ordered a new set of X-rays and an MRI. For convenience’s sake, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when she called for an appointment. It came through only after several more calls.

Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.)

“The burden of arranging everything I need — it’s huge,” Gilliam told me. “It leaves you with such a sense of mental and physical exhaustion.”

The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it’s also evidence of the poor fit between older adults’ capacities and the health care system’s demands.

“The good news is we know so much more and can do so much more for people with various conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with health care. “The bad news is the system has gotten overwhelmingly complex.”

Multiple Doctors Visits

That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward more medical care, and specialization among clinicians, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.

“It’s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” she said. If someone has multiple medical problems — say, heart disease, diabetes, and glaucoma — interactions with the health care system multiply.

Ganguli is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. (The data is from 2019, before the covid pandemic disrupted care patterns. If any services were received, that counted as a day of health care contact.)

That study found that slightly more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year.

“Some of this may be very beneficial and valuable for people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we’re asking older adults to do and whether that’s realistic.”

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has for many years raised an alarm about the “treatment burden” that patients experience. In addition to time spent receiving health care, this burden includes arranging appointments, finding transportation to medical visits, getting and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home, and following recommendations such as dietary changes.

Overwhelmed Patients

Four years ago — in a paper titled “Is My Patient Overwhelmed?” — Montori and several colleagues found that 40% of patients with chronic conditions such as asthma, diabetes, and neurological disorders “considered their treatment burden unsustainable.”

When this happens, people stop following medical advice and report having a poorer quality of life, the researchers found. Especially vulnerable are older adults with multiple medical conditions and low levels of education who are economically insecure and socially isolated.

Older patients’ difficulties are compounded by medical practices’ increased use of digital phone systems and electronic patient portals — both frustrating for many seniors to navigate — and the time pressures afflicting physicians.

“It’s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,” Montori said.

Meanwhile, clinicians rarely ask patients about their capacity to perform the work they’re being asked to do.

“We often have little sense of the complexity of our patients’ lives and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a 2022 paper on reducing treatment burden.

Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother had a stroke in February 2021 while shopping at Walmart. At the time, the older woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.

During the year after the stroke, both of Hartnett’s parents — fiercely independent farmers who lived in Hubbard, Nebraska — suffered setbacks, and medical crises became common. When a physician changed her mom’s or dad’s plan of care, new medications, supplies, and medical equipment had to be procured, and new rounds of occupational, physical, and speech therapy arranged.

Neither parent could be left alone if the other needed medical attention.

“It wasn’t unusual for me to be bringing one parent home from the hospital or doctor’s visit and passing the ambulance or a family member on the highway taking the other one in,” Hartnett explained. “An incredible amount of coordination needed to happen.”

Hartnett moved in with her parents during the last six weeks of her father’s life, after doctors decided he was too weak to undertake dialysis. He passed away in March 2022. Her mother died months later in July.

Easing the Healthcare Burden

So, what can older adults and family caregivers do to ease the burdens of health care?

To start, be candid with your doctor if you think a treatment plan isn’t feasible and explain why you feel that way, said Elizabeth Rogers, an assistant professor of internal medicine at the University of Minnesota Medical School. 

“Be sure to discuss your health priorities and trade-offs: what you might gain and what you might lose by forgoing certain tests or treatments,” she said. Ask which interventions are most important in terms of keeping you healthy, and which might be expendable.

Doctors can adjust your treatment plan, discontinue medications that aren’t yielding significant benefits, and arrange virtual visits if you can manage the technological requirements. (Many older adults can’t.)

Ask if a social worker or a patient navigator can help you arrange multiple appointments and tests on the same day to minimize the burden of going to and from medical centers. These professionals can also help you connect with community resources, such as transportation services, that might be of help. (Most medical centers have staff of this kind, but physician practices do not.)

If you don’t understand how to do what your doctor wants you to do, ask questions: What will this involve on my part? How much time will this take? What kind of resources will I need to do this? And ask for written materials, such as self-management plans for asthma or diabetes, that can help you understand what’s expected.

“I would ask a clinician, ‘If I chose this treatment option, what does that mean not only for my cancer or heart disease, but also for the time I’ll spend getting care?’” said Ganguli of Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

Keeping Hope Alive

By Mia Maysack, PNN Columnist

In 2022, I was fortunate enough to receive the International Pain Foundation's “Hero of Hope”' award for patient advocacy. I felt and still feel remarkably honored for the recognition, although I am not motivated by any accolade or prestige. I fight for those who can't. I use my voice so others can be heard.

As a patient advocate, I’ve learned the absolute most important thing that I can do is rescue myself – repeatedly. If I don't make it and I'm no longer here, what good can I do or offer to anybody else?

Recently, I've struggled immensely. There have been moments that haven't felt survivable. I sought support, reached out for help, attended therapy, and tried endless lifestyle approaches with little to no progress in how I feel.

It is important for me to express this publicly because I want to drive the point home: An optimistic perspective alone is not enough for survival. You can seek out the bright side, acknowledge how things could always be worse, recognize all your blessings, and be grateful for them -- yet still suffer immensely.

I reached out to someone to vent some of this, in what I'd hoped would be a receptive and safe space. But I was quickly reminded of the extent to which people simply don't know how to navigate others' hardships or struggles.

“I'm having a rough time,” I said.

“Maybe you need to go to counseling,” they replied.

“I tried that again recently. But my medical trauma is extensive. It did not help and actually worsened things for me."

[insert awkward silence here]

"Ordinarily,” I continued, “I’d pour myself into other causes, things, and people. That usually helps, but I am struggling with energy and motivation.”

“Sounds like depression,” they said.

“Depression isn’t new to me,” I explained. “Coping with daily ailments isn’t something that everyone can bear. Depression in these instances occurs by default. It’s an underlying current underneath the symptoms, constantly demanding my attention and effort to accommodate and manage it.”

"I think you need to pour into yourself,” was their reply.

"I have, extensively. But it is as though I'm a cracked cup and it all leaks out,” I said.

[insert another awkward silence]

At this point, I can sense they are uncomfortable, so I rush to ease their pain as mine intensifies. And I’m reminded how there’s just about nowhere for us to turn where we can be adequately received or understood.

“But I will figure it out, I always do,” I declared, tears running down my cheeks.

"Now that's the spirit!” they proclaimed.

I’ve always possessed “spirit” but sometimes it’s not enough. This is why I have such a profound empathy for those who idealize or even follow through on ending life. I see and understand how and to what extent we reach out for help, yet I'm repeatedly reminded that we're ultimately left on our own -- by each other, by our systems, and by society as a whole.

No one wants you to end your existence, yet almost nothing and no one is there to contribute meaningfully to your quality of life.

In observation of this and because I strongly believe in cultivating solutions -- as opposed to fixating on problems – I’m supporting efforts by the American Foundation for Suicide Prevention to raise awareness and talk about how we can prevent suicide and increase access to mental healthcare.

The darkness in me honors yours. It's not only okay, but profoundly necessary to allow that part of ourselves to exist out loud. It’s the only way through to the light. 

I imagine a future where we don't have to beg and plead for basic human needs, and we’re no longer alone in attempting to figure it all out.  This vision keeps me going and keeps the fire of hope alive.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.”  A comprehensive set of resources can also be found at this link.

Toxic Stress Can Lead to Chronic Illness

By Dr. Lawson Wulsin  

COVID-19 taught most people that the line between tolerable and toxic stress – defined as persistent demands that lead to disease – varies widely. But some people will age faster and die younger from toxic stressors than others.

So how much stress is too much, and what can you do about it?

I’m a psychiatrist specializing in psychosomatic medicine, which is the study and treatment of people who have physical and mental illnesses. My research is focused on people who have psychological conditions and medical illnesses as well as those whose stress exacerbates their health issues.

I’ve spent my career studying mind-body questions and training physicians to treat mental illness in primary care settings. My forthcoming book is titled “Toxic Stress: How Stress is Killing Us and What We Can Do About It.”

A 2023 study of stress and aging over the life span – one of the first studies to confirm this piece of common wisdom – found that four measures of stress all speed up the pace of biological aging in midlife. It also found that persistent high stress ages people in a comparable way to the effects of smoking and low socioeconomic status, two well-established risk factors for accelerated aging.

Good Stress vs. Toxic Stress

Good stress – a demand or challenge you readily cope with – is good for your health. In fact, the rhythm of these daily challenges, including feeding yourself, cleaning up messes, communicating with one another and carrying out your job, helps to regulate your stress response system and keep you fit.

Toxic stress, on the other hand, wears down your stress response system in ways that have lasting effects, as psychiatrist and trauma expert Bessel van der Kolk explains in his bestselling book “The Body Keeps the Score.”

The earliest effects of toxic stress are often persistent symptoms such as headache, fatigue or abdominal pain that interfere with overall functioning. After months of initial symptoms, a full-blown illness with a life of its own – such as migraine headaches, asthma, diabetes or ulcerative colitis – may surface.

When we are healthy, our stress response systems are like an orchestra of organs that miraculously tune themselves and play in unison without our conscious effort – a process called self-regulation. But when we are sick, some parts of this orchestra struggle to regulate themselves, which causes a cascade of stress-related dysregulation that contributes to other conditions.

For instance, in the case of diabetes, the hormonal system struggles to regulate sugar. With obesity, the metabolic system has a difficult time regulating energy intake and consumption. With depression, the central nervous system develops an imbalance in its circuits and neurotransmitters that makes it difficult to regulate mood, thoughts and behaviors.

Though stress neuroscience in recent years has given researchers like me new ways to measure and understand stress, you may have noticed that in your doctor’s office, the management of stress isn’t typically part of your treatment plan.

Most doctors don’t assess the contribution of stress to a patient’s common chronic diseases such as diabetes, heart disease and obesity, partly because stress is complicated to measure and partly because it is difficult to treat. In general, doctors don’t treat what they can’t measure.

1 in 5 Americans Live with Toxic Stress

Stress neuroscience and epidemiology have also taught researchers recently that the chances of developing serious mental and physical illnesses in midlife rise dramatically when people are exposed to trauma or adverse events, especially during vulnerable periods such as childhood.

Over the past 40 years in the U.S., the alarming rise in rates of diabetes, obesity, depression, PTSD, suicide and addictions points to one contributing factor that these different illnesses share: toxic stress.

Toxic stress increases the risk for the onset, progression, complications or early death from these illnesses.

Because the definition of toxic stress varies from one person to another, it’s hard to know how many people struggle with it. One starting point is the fact that about 16% of adults report having been exposed to four or more adverse events in childhood. This is the threshold for higher risk for illnesses in adulthood.

Research dating back to before the COVID-19 pandemic also shows that about 19% of adults in the U.S. have four or more chronic illnesses. If you have even one chronic illness, you can imagine how stressful four must be.

And about 12% of the U.S. population lives in poverty, the epitome of a life in which demands exceed resources every day. For instance, if a person doesn’t know how they will get to work each day, or doesn’t have a way to fix a leaking water pipe or resolve a conflict with their partner, their stress response system can never rest. One or any combination of threats may keep them on high alert or shut them down in a way that prevents them from trying to cope at all.

Add to these overlapping groups all those who struggle with harassing relationships, homelessness, captivity, severe loneliness, living in high-crime neighborhoods or working in or around noise or air pollution. It seems conservative to estimate that about 20% of people in the U.S. live with the effects of toxic stress.

Recognizing and Managing Stress

The first step to managing stress is to recognize it and talk to your primary care clinician about it. The clinician may do an assessment involving a self-reported measure of stress.

The next step is treatment. Research shows that it is possible to retrain a dysregulated stress response system. This approach, called “lifestyle medicine,” focuses on improving health outcomes through changing high-risk health behaviors and adopting daily habits that help the stress response system self-regulate.

Adopting these lifestyle changes is not quick or easy, but it works.

The National Diabetes Prevention Program, the Ornish “UnDo” heart disease program and the U.S. Department of Veterans Affairs PTSD program, for example, all achieve a slowing or reversal of stress-related chronic conditions through weekly support groups and guided daily practice over six to nine months. These programs help teach people how to practice personal regimens of stress management, diet and exercise in ways that build and sustain their new habits.

There is now strong evidence that it is possible to treat toxic stress in ways that improve health outcomes for people with stress-related conditions. The next steps include finding ways to expand the recognition of toxic stress and, for those affected, to expand access to these new and effective approaches to treatment.

Lawson R. Wulsin, MD, is a Professor of Psychiatry and Family Medicine at University of Cincinnati. He also practices psychiatry in primary care settings, specializing in psychosomatic medicine.

This article originally appeared in The Conversation and is republished with permission.

A Case Study in the Undertreatment of Surgical Pain

By Dr. Stefan Franzen

“Patient Z” is a close family member who has an incurable form of arthritis known as ankylosing spondylitis. His back is partially fused and his large joints are so damaged that they all need replacement. Each step he takes, even with a walker using his arms as the main support, is exceedingly painful. Just getting into a car to go to a doctor’s office is excruciating.

Several years ago, Patient Z went through an opioid rotation from morphine/oxycodone to buprenorphine. This was a forced choice. His pain clinic told him that they would make a final push to taper him to a daily dose of 120 MME (morphine milligram equivalents). That was the statewide cap on prescribing. Patient Z had reduced gradually for years to accommodate them, but when the dose fell below 180 MME, he felt miserable much of the time.

Patient Z transferred to a pain institute where he was prescribed pure buprenorphine for pain. The doctors at the institute had conducted clinical studies and found buprenorphine to be as effective as morphine. When Patient Z reached the maximum daily dose of buprenorphine in sublingual form, he felt relief.

Patient Z might never have chosen buprenorphine, but he found that it managed his pain on most days. In his experience, the dose was as effective as 200 MME of morphine and oxycodone. But pain flares can overwhelm even that dose.

A surgeon urged surgery because stenosis and deformation of the neck caused by ankylosing spondylitis could lead to paralysis. Realizing that he was losing sensation in his arms and hands, Patient Z scheduled the surgery.

At the pre-op, he was told that the surgery required an incision in the front and back of his neck. The surgeon would implant a metal brace that was about 5 cm long. Patient Z asked the surgeon’s nurse about pain management and she assured him that he would be comfortable in the hospital.

He also asked his pain clinic what they would do to help with post-operative pain. They told him to rely on hospital care. Patient Z knew the constraints on the pain clinic and did not push the point. When he arrived for surgery, he still did not know what was planned for post-surgical pain control.

‘My Pain Level is 10’

The surgery was successful. Patient Z woke up in a hospital bed with a neck brace. But he could not move. After a few hours the pain set in. He could not believe that pain could be so all-consuming. Even lying motionless in bed, his body throbbed with pain radiating out from the back of his neck. He felt like he was nailed to the bed.

The nurses were told not to give him buprenorphine on the first night. One nurse said he was afraid that Patient Z would suffer respiratory depression. At first, they only gave him acetaminophen and pregabalin.

In the middle of the night, Patient Z called the nurse and said something he never thought he would say: “My pain level is 10.”

The nurse left to contact the doctor in charge. An hour passed. It seemed like an eternity to Patient Z, who was in agony. Finally, the nurse returned with a muscle relaxant and a two-milligram hydromorphone pill. That is the equivalent of 8-10 milligrams of oral morphine.

Patient Z knew how low this dose was, but he swallowed the pill and hoped the pain would stop. It did not. Patient Z is stoic and had suffered from extreme pain in the past, but he had to speak up. The pain was truly unbearable. His collapsed hips were throbbing. Pain was shooting down his arms and legs. Any movement brought on involuntary spasms.

Finally, at 5 am, a nurse gave Patient Z a two-milligram injection of hydromorphone. The pain abated and he could finally rest. This dynamic of denial and waiting until Patient Z was nauseous from pain before providing relief continued for three more days. Nurses rotated in and out, and the doctors made decisions that left him miserable most of the time.

On the fourth day after surgery, Patient Z was released from the hospital. Patient Z asked what he should do to control the pain. The surgeon looked unhappy. He said that the pain of surgery should pass within a week and Patient Z had already received ample pain medication. Other pain was not the surgeon’s concern, and he was told to consult with his pain physician.

By this time, one of the nurses who had seen Patient Z several times came to understand how debilitating his pain was. The nurse told Patient Z that she had observed many recovering surgery patients. She said that neck operations with an incision from the back is one of the most painful.

Patient Z was lucky that people could see his struggle with pain. Many patients have pain that is not recognized. Even so, the nurse told him that they could not write a prescription for opioid pain medication. Someone must have decided that Patient Z really did have unmet pain needs.

Maybe the nurse advocated for him because, as Patient Z was being released the nurse unexpectedly gave him a vial of pain medication. She said that it would be enough to keep him comfortable until the neck pain subsided. When Patient Z arrived home and looked at the vial, he saw that the oral hydromorphone dose was 12 milligrams daily, the equivalent of approximately 50 MME. And he only had a six-day supply.

This was not nearly enough to give Patient Z relief from the neck pain, back pain, hip pain and systemic inflammatory pain. To make matters worse, the instructions stated that he should not take buprenorphine for the six days he was on hydromorphone.

After one day, Patient Z’s misery escalated because he was going through withdrawal while also recovering from neck surgery. After two days, Patient Z resumed taking buprenorphine and stopped taking hydromorphone. At least the buprenorphine gave him partial relief.

Few patients take buprenorphine for pain in the U.S. It has been reported that hydromorphone is compatible with buprenorphine in post-surgical pain management.  Yet doctors and nurses appeared unfamiliar with buprenorphine, which is also used to treat opioid addiction when combined with naloxone. Their comments in the hospital showed that they did not understand that buprenorphine is safer than other opioids and can also be used to treat pain.

The combination of misunderstanding buprenorphine and the current practice of giving as little pain medication as possible put a severely ill patient through an unnecessary ordeal. Today, most medical education and pain research is solely aimed at reducing or eliminating opioids, rather than using buprenorphine and other alternative opioids to provide at least some relief.

Buprenorphine is slow-acting and therefore not the ideal medication for acute pain. But studies have shown that it can be combined with other opioids to provide relief. For some types of pain, there is no substitute for opioid pain medication.

Stefan Franzen, PhD, is a Professor of Chemistry at North Carolina State University.

He is the author of “Patient Z” – a book that looks at pain, addiction and the opioid crisis through the eyes of a loved one who can’t find good pain care.

Franzen recently published a sequel to Z’s story and his use of buprenorphine for pain, called “Z’s Odyssey.”